Living with Idiopathic Scoliosis

Caroline Bell has been living with idiopathic scoliosis since she was a teenager. Now an adult with a spinal fusion, she is starting to tell her scoliosis story. Today, she shares the events leading up to her surgery, life beyond it, and both the visible and invisible scars of scoliosis. Her first book Tangled in the Curves comes out later this year and is a first-hand account of life with scoliosis as well as ways to better support adolescents with scoliosis.

Living with Idiopathic Scoliosis

By: Caroline Bell

I was born and raised in Ottawa, Canada where the summers are sticky and the winters are snowy. I was a very active, healthy child with no medical conditions to speak of. Life was grand!

Fast-forward to middle school, where some whispers of pain began making themselves heard. My neck and shoulders were always tight and sore, worsening week over week to the point that family plans had to be canceled or adjusted when I simply couldn’t endure it anymore. Only a pre-teen and already I was seeing massage therapists and chiropractors regularly, taking painkillers to make it through school days. Yet all anybody was able to tell my worried parents was, “Everything’s fine, we don’t see anything of concern. Yoga and swimming are good activities. She should wear scarves to keep her shoulders from tensing up when it gets cold.”

Fast-forward two years later. Still visiting a chiropractor regularly, my parents were the ones who discovered a new, significant prominence on my back. Hello, adolescent idiopathic scoliosis! Two big curves had shown up to change my life.

Scared, confused, embarrassed, I told nobody about it for fear of being “different.” Let’s fast-forward through two more years of physical and now emotional pain, curves progressing despite a back brace trying to rein them in… surgical intervention was now needed.

Once surgery and recovery was over, though, my scoliosis was also apparently “over” with the exception of my new 12-inch scar and inability to arch. I was not guided to any additional information or support for this brand new body. Still pained but otherwise “normal,” I simply went off to university to begin the next chapter in my life. I continued massage therapy and varying types of physical therapy, doing my best with what little information I had, unaware that there was so much more I could learn to better care for my curvy back.

A flurry of scoli-related events peppered my late twenties. I noticed myself cringing a little bit at the start of everyday activities – even just washing dishes – anticipating that these also had pain waiting for me. Well, this was hardly enjoyable, nevermind relaxing! It seemed that either the years were starting to add up in terms of age and pain, or the physical therapies I had been compiling over the years were not cutting it… or was it both? All I knew for certain was that I was finally tired of hiding in pain sight. It was time to face my scoliosis, inquisitively learn about it, and make things better!

I realized that, as much as I had hidden my scoliosis and bottled up my sadness, I could not make any impact whatsoever if I remained hidden. I began by speaking with other scoli warriors, finally allowing myself to grieve the losses that scoliosis created. Imagine my surprise to discover a small army also hiding in pain sight with physical and emotional scars: all hurting in more ways than one with little direction as to where to begin, yet ready to feel better! Clearly, more support and education was needed for these scared and scarred individuals.

Tangled in the Curves provides first-hand relatable experiences of life with scoliosis, with and without corrective surgery, through an honest and supportive voice. It aims to help others living with scoliosis feel less alone, lost, and scared while bringing awareness to the ailment itself. Sharing what so many of us learned “the hard way” through our own scoli journeys, it brings light towards self-acceptance and inner strength. Its writing led to interviews with patients and professionals, collaborations with other scoli leaders, and speaking engagements at the Canadian Spine Society’s annual conference and Higgy Bear’s Higgy-Con.

Among the many components of scoliosis – physical, emotional, and social impacts – below are three areas where additional support could be introduced in adolescence and strengthened in adulthood:

  1. Scoliosis patients can feel alone. Knowing others have wonderful lives with scoliosis and fusions is encouraging. Actually meeting  another scoli warrior, “bracer,” or “fusioneer” is empowering! Organizations like Scolios-US and Higgy Bears have mentor programs and Zoom groups to chat with other scolis.
  2. Scoliosis patients are not adequately educated about their unique bodies. A “My Scoliosis 101” education from a professional trained in the biomechanics of scoliosis can teach them about their unique curves and how best to care for their scoli body for life. (Something under the Physiotherapy Scoliosis-Specific Exercises (PSSE) umbrella is a popular expertise.)
  3. Scoliosis patients are not entirely sure how to safely engage in some physical activities. Aside from yoga and swimming, which activities are beneficial for scoliosis? Additionally, which sports/workouts should be adjusted to consider curves or fusions? And how should they be adjusted for the individual?

There are two things I now know beyond a shadow of a doubt that I wish I knew when I was a lost and curvy teenager: You are not the only person with scoliosis, and you can learn how to care for your own curves. Something I did know was that I could not handle scoliosis all on my own – reach out to people for emotional and physical support. It is possible to untangle a part of your curvy journey.

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